By: Molly Murphy Berry, Esq., Community Fund Ohio
Learning that your child may have a developmental disability can leave you with more questions than answers. Where do you start? Who can help? What should you be doing right now? Although every family’s journey looks different, and there’s no single “right” way to navigate it, a few thoughtful steps early on can help you build a strong foundation for your child and give you confidence that you’re moving in the right direction.
Step 1: Understand the evaluation process. Your county Board of Developmental Disabilities (DD Board) is worth reaching out to early, even if you’re not yet sure your child will qualify for services. Depending on your child’s age and needs, the DD Board can connect you with Early Intervention services, developmental evaluations, service coordination, transition planning, and information about programs that may become relevant as your child grows.
For children from birth to age three, another starting point is to contact Help Me Grow, Ohio’s no-cost parent support program. Their Early Intervention program evaluates children under three for developmental delays or disabilities and, if needed, builds a local team of a service coordinator and providers to create an Individualized Family Service Plan. Help Me Grow also offers a separate Home Visiting program, which provides in-home support on everything from child development to local resources.
For children older than three, you can request a formal evaluation directly from your local school district, even if your child is not yet enrolled in school. Ohio law requires the district to respond within 30 days, either by scheduling an evaluation with your consent, or by explaining in writing why it does not suspect a disability. We would suggest that you put your request in writing (email works well), briefly describe the behaviors or difficulties that concern you, and attach any outside evaluations you already have. A medical diagnosis and educational eligibility are governed by different rules, so a formal school evaluation matters even if your pediatrician has already raised concerns. Districts can deny a request, but you have the right to appeal. If the school district’s evaluation shows your child needs additional services, the district must develop an Individualized Education Program (IEP) generally within 30 days of that eligibility determination.
Step 2: Build your team. At first, this can feel like something you’re navigating alone: a blur of appointments, paperwork, and worry. It’s common to feel isolated, but keep in mind that about 1 in 6 children in the U.S. has a developmental disability, according to the CDC. That means millions of families are simultaneously taking this journey, and many of them have found real community with each other, through local parent groups and events like those publicized through Northeast Ohio Parent, or online spaces on Facebook and Reddit built around a specific diagnosis or shared experiences.
As you settle into this journey, you will discover that you don’t have to carry it all yourself. Your local DD Board, the Help Me Grow program, and your school district, all mentioned in Step 1, are part of your team. Your child’s pediatrician, specialists, and therapists all play crucial roles, too. So do other parents.
Step 3: Learn about available services. After a diagnosis, it’s common to feel like you should pursue everything at once. But it’s most helpful to focus on what your child actually needs right now, rather than trying to line up every possible service immediately. Depending on your child’s age and needs, that might include Early Intervention for infants and toddlers; speech, occupational, or physical therapy; preschool special education and school-based supports through an IEP or 504 Plan; or recreational or social programs designed for children with disabilities. Ask your team which of these would make the most difference right now, and prioritize that way. And keep in mind that your child’s needs will shift over time. What’s right today may look different in a few years, and that’s completely normal.
Step 4: Start to think about government benefits. Many families are surprised to learn that Medicaid isn’t always limited to low-income households. It also covers services many children with disabilities rely on, through waiver programs administered by your county DD Board, regardless of parental income in most cases (before age 18). It’s also worth looking into Social Security benefits, though eligibility rules and financial limits are strict and complicated at any age. This is why many families choose to consult an attorney who focuses on special needs planning. A well-intentioned birthday check from a grandparent, an inheritance, or a settlement can unintentionally disqualify a child from the benefits they depend on, and an attorney can help structure gifts or savings so that doesn’t happen. Two tools worth knowing about: special needs trusts, which allow money to be set aside for a child’s benefit without counting against benefit limits (nonprofit organizations like Community Fund Ohio offer a lower-cost option), and STABLE accounts, Ohio’s savings program for individuals with disabilities.
Step 5: Give yourself grace. There will be appointments that feel overwhelming, paperwork that seems endless, and moments where you wonder if you’re doing enough. You are. Planning for a child with a disability isn’t a single event; it’s an ongoing process that grows and changes along with your child. Celebrate the small wins, ask questions when you have them, lean on your community when you need it, and know that it’s okay for your plans to change along the way.
No family should have to figure this out alone, and in Northeast Ohio, you don’t have to. Between your child’s care team, your county DD Board, local parent groups, and resources like this magazine, there’s help available. And small steps add up to real progress. Requesting an evaluation, calling your county DD Board, joining a parent support group, or simply reading an article like this one – that next step is enough.
Visit Community Fund Ohio for info.
